Dear Faith- Lana Parrilla, OUAT and other stuff.

(Just a little letter to faith. I might do a few of these- I have spoken to her parents and they said its perfectly ok to talk about her and about the recent events to do with her)

Dear Faith

Everytime I get a delivery from a certain company recently, its a man called Mario that hands it to me. We’ve got a great rapport building you know. We’ve got a little game going on. Everytime he rocks up at my house, he talks about a different famouse person called either Lana or Alana (yeah don’t go there faithy, I know youd be laughing by now – you always laughed at my face when anyone ever called me by my sunday name of Alana.). So far we’ve had all sorts from Alanna Knight to Lana Del Ray. Sometimes he’ll even start singing. The other day I was in a foul mood. I’m talking F O U L. He arrived and I was just not in the mood… then who was that days famous Lana?

LANA PARRILLA. Your Favourite actress, and one of my favourite actresses, one who I came to love – because of you faithy.  I then spent 15 minutes talking to this Mario guy about lana parrilla. I found us another evil regal in Mario the delivery guy.

He came back today and did the evil regal hand sign when I opened the door. I was so so so impressed. It really did crack me up.

It brought back a whole lot of memories of time with you, and how you LOVED Lana Parrilla, and Once Upon A Time.

I sat and read through our old texts.

It took you such a long time for you to convince me to watch OUAT.

You sent me text after text saying how amazing it was and that I would L O V E  ‘Regina’ and the actress that plays her (Lana Parrilla).


My favourite voicemails from you were  the ones from all around that time. the hilarious ones where you tried to convince me to watch OUAT. The ones where you would ring me and just put the phone next to your laptop speakers. So I had voicemail after voicemail of you just playing OUAT down the phone at me and at the end of each one youd scream YOU WILL BE AN EVIL REGAL.

I eventually watched it just to shut you up and fell in love with the show as you well know. The smug look on your face as I face-timed you after watching the first episode.

It took me a while to watch beyond the first season due to everything else going on.

In fact it wasn’t until after you died that I watched beyond the third season.

I wish I hadn’t waited so long.

It’s funny because there are so many other shows that you tried to convince me to watch. I haven’t gotten round to them yet. but you really were right. I do love OUAT and I do adore Lana Parrilla. just like you did and just like you said I would.

And you know what? I AM proud to be an evil regal.

I want to say thank you to you in this letter. I certainly wasn’t expecting your dad to turn up a week before my 20th birthday with presents from you. Already wrapped and ready for me to open.

I certainly didn’t expect a bright green mankini and a happy birthday cake hat thing.

I probably SHOULDVE expected it with you. Always have to have the last word don’t you.

Your dad explained about all the letters they’re finding around the house, in your things, in your aunties house and land.

Trust you to go all PS I love you on us. Hiding letters everywhere. pre wrapping presents with instructions.

I know why you’re doing it. You were scared you’d be forgotten. I get it.

I forgive you for leaving me by the way. I know why you did and sure I was pissed at you at first, but I get it now. You said you were sorry the last time we spoke on the phone, just hours before you went. When I asked you what you were sorry for you said “for yawning”. But it wasn’t for yawning was it.

Do you remember why I sang Demons to you a week before you died on the phone? I only remembered about it because you texted me saying “thank you for singing  Demons tonight it helped distract me.” and re reading our texts brought it back to me.  I know you kept laughing saying “Its a lana parrilla song and a lana pusey song how fabulous” – but I honestly cant remember what I was distracting you from, or why that song in particular was being sung. I wish you were here to ask. I’m constantly singing it to myself trying to remember. (that and I DO Love the song, you knew that though.)

Another song that keeps making me think of you is “lets have a kiki”. That time when we were waiting, You were so shocked when this was playing through your speakers and I knew e v e r y single word and even did my own little dance up and down the corridor. When it was over, you were like ” HAVE YOU TAKEN YOUR STRONG MEDS YOU PRAT?”  – and I replied, simply with “nope I just really like the scissor sisters ” and calmly sat back down next to you and carried on the conversation from before the song started.

You’ll be pleased to know I still have mrs foggins. – I still hate her, sorry but its true. shes freaky. Who the hell keeps a toy orville with them 24/7 and calls it mrs foggins. (well you ofcourse)

I miss you.

I really do.

I’m moving at some point soon. Its excited scary and everything in between. Wish you were here to see it all happen.

I often wonder whether you’re actually with my NatNat now. You probably are. she’s probably corrupted you and got you pissed everynight up there. I hope you have met. She would’ve found you funny.

Love you shrimps xx

your beanie xx









Posted in Chronic Illness, ehlers danlos, Health, personal blog, Uncategorized | Tagged , , , , , , , , , , | Leave a comment


I’m sorry I’ve been absent from here again.

Life has been hectic and I’ve had deadlines for other projects and my diploma thingy so this has taken a bit of a back burner.

HOWEVER I think I’ve found a way to balance it all out now, so lets see how we go.


In a matter of days, I shall be 20.

I suddenly feel really old and like I don’t know where the years have gone.

Time is just going by too quickly.

My mum and dad were married by the time she was 20. how scary is that. If they’d have had me straight away I could be …well… a bit older than I am now 😉

New tattoo is this week, both myself and my dad are getting tats done. Stay tuned for that update!

speak soon (I hope)

L x



Posted in Uncategorized | Leave a comment

Faiths last words.

As most of you know, my friend faith passed away in this year. Her letter to me can be read here (The Strangest Post I’ll ever do. )

Her funeral was… very much what she wanted. She had planned the day herself, and we followed her wishes.

Her music included the Macarena, Faith, Sex Bomb and Kiss.  Her hearse was a motorbike and side car. I wore my flamingo hat, and my “pink pj top” and white denim jacket as per her instructions. Her cousin wore her tiger onesie. Her parents, brother and very close family all followed their instructions as to what to wear too.

This is what I was made to read at faiths funeral. She wrote itself before she died, 4 of us had different variations of the same letter and muggins here was the one who ended up reading it. Her mum suggested I put it on here, so that’s what I’ve done. here goes.

Hello people that are still living this is written by the girl in the coffin in the front. Cant miss me there should be a giant zebra toy on top.
And if this version is being read out, its being read by one of my bestfriends in the entire universe, Beanie other wise known as Lana – the girl standing in front of you in pink and wearing a flamingo hat. – which are my wishes.
It also means my mum and co cant read out what i asked them too which means theyre struggling so please be nice to them.
Lanas got this shit covered though so im not worried shes a good public speaker.
Now, i assume the vicar will say all the usual stuff about me such as when i was born and where i went to school etc etc etc etc blah blah blah blah BLAH BORING You didnt know me really!
The ones that knew me are my parents, godparents, my beanie, my cousin jonny, and the zebras from our little group.
The rest of you are probably already muttering what the fuck are we at the wrong funeral under your breath, as my hearse was a motorbike and sidecar, weve had the macarena as an entrance, theres a sign up which says theres no programme of order or whatever its bloody called because its a waste of trees and #faithy aint a tree murderer and now we’ve got a flamingo girl reading out a letter from the dead girl in the coffin.
See most of you knew the boring rude slightly depressing reclusive Faith Valentina Maria Sally-Anne Grace .
Yeah mum and dad cheers for giving me more names than royalty.
But really if you REALLY took the time to get to know me youd have known faith the great big gay disabled comedian.
With lots of sass and lots of sarcasm and lots of laughter.
I was depressed and my brain could be a mental shit tip. but i was also so much more.
Most of you boring bastards are religious to the bones and happen to have the personality of a wet sock, i however am not.
Despite my name i do not feel like i have a faith.
So excuse me but i refuse to have a hymm.
Instead im having a song played after this which will probably make my mother, auntie marlene, Lana and Jonny laugh so much they will cry because of the memories.
That and the faces of the rest of you will be comical.
Its strange to think ill be dead when this is being read to you.
Ive made the decision to take control of whats going on. And i know a lot of you will never approve but its my choice and my decision. I cant cope with The pain like others can. My body and my brain is trapped in a living hell. My soul wants to break free.
I dont know whats next but whatever is next ill see my loved ones again one day i know i will.
Last things.
Mummy and Daddy I love you and im sorry youre having to have to do this today.
Auntie marley, Uncle Pete, Auntie Lillian and uncle richard. I love you  and thank you.
Beanie what can i say that i havent already covered in a letter. Aside from see you later bitch.
Jonny im sorry i never called you by your Real name of journey grace. But quite frankly you suit jonny better and your parents mustve been on crack when they named you. I love you always and i meant what i said about the tattoo in your letter.
Zebras – i hope the skype link is set up and youre watching this. Thank you – now look after beanie and look after each other.
James, if youre here I forgive you. Now dont be a shit son step up please. They need you.
Everyone else. You didnt do much for me but nows the chance to put shit right and be there for my family.
Look dont be sad. Im free.
Now enjoy the music, enjoy the boring shit that the vicar will say about me.
Over and out mother fuckers
Love Faithy.



Posted in Chronic Illness, ehlers danlos, Health, personal blog, Uncategorized | Tagged , , , , , | Leave a comment

A wedding and a packet of rolos.

If you didn’t know, I have 6 godparents. (well 6 and a half but that’s a long story in itself 😉 ).

Two of my godparents are Rita and Paul. My auntie Rita and uncle paul aren’t here anymore bless them. So their daughter, Suzanne, is like another honoury Auntie to me.

Earlier this month, Auntie Sue got married!!!

Its funny, she was my mum & dads bridesmaid 30 odd years ago, and NOW shes a bride herself!!!

I went blue for the wedding!

I and a friend of mine took the photos and video footage for the day and it was just such a bloody beautiful day.

It knackered me out though, and I ended up paying it for it later that night and the next day. – bloody worth it though.

Our Sue looked STUNNING. And her groom, chris (now my uncle chris 😉 ) looked very dapper.


I don’t do crying or tears, certainly not at weddings, yet on their big day I cried!!! not once, not twice but THREE TIMES! that’s how BEAUTIFUL it was.

Another huge part of the day was a proper reunion with my dems.

Demi is my godparents granddaughter. Through various circumstances we didn’t see each other for a fair few years. And to be reunited with her was just bloody fabulous.

One of the strongest memories I have from our childhood was that I always gave her my last rolo, no matter how many I had already given her from the packet already, demi always, ALWAYS got my last one- yep I really did love her that much (or maybe I was just a sucker who gave away their sweets 😉 ). So for traditions sake who got the last rolo at the wedding? My girl did. You’ll always be one of my bestests dems, no matter what ever happens or how long we go without seeing each other, family we will always be. Love you always! IMG_9426

Huge shoutout to those I met at the wedding- Mandy, Kayley, Jackie! you’re officially in my circle now 😉 welcome  to the gang and I hope to see you all again at some point!

Dear Auntie Sue and my new uncle chris (that’s going to stick you know)

You two are just so bloody gorgeous together.

Thank you for making her happy chris.

Congratulations to you both.

Thank you for letting me be a part of what was beyond a special day.

I’ll see you both super soon.

Congratulations to mr and mrs G! I Love you both!

L xx

Posted in bucket list, Chronic Illness, ehlers danlos, Health, personal blog, Uncategorized | Tagged , , , , , , , , , | 2 Comments


I’ve not been publishing my blog posts recently.

I’ve been silent. Again.

I’m sorry.

Things have been happening again. Not all of them are negative, a lot of positive things have happened too.

Life just got really hectic.

But I’m back with a vengeance.

watch this space x

Posted in Uncategorized | Leave a comment

Happy Mothers Day

IMG_9178Happy Mothers Day to my Mummy.

Now I know everyone thinks their mum is the best but Mine really is.

If you dont know the full ins and outs Im not going to explain it today or on facebook (feel free to ask but i will not post it on social media) – basically i got a diagnosis last year that as a family was hard to process, and although it made sense, it wasnt easy to accept or get our heads around, mum especially. And then after that, there was even more that went on that was incredibly challenging to deal with. Im so lucky to have my mum because although our lives has been a bit difficult (and days continue to have scary moments) she kept it together and continued to fight with me for the treatment, support and Help i needed.

She works full time, comes home and deals with me- often ive been on the floor in a heap or in pain and i go “muuum i need to go somewhere” (somewhere being a hospital). Then if we go to hospital of our own occord or ambulance, We then are often there till the early hours, or im kept in, which still means mums done a full day at work, and then is up till all hours. Yet she doesnt ever make me feel like a burden.

We are big on “normality” in our house because our lives are far from normal, so we laugh and joke as much as possible, We muck about and we have banter. We create happy memories in the dark days.

We argue like any other parent and child dont get me wrong we wind each other up.

But were incredibly close and have a very special bond.

Mumsie is one of a kind. I mean how many people can say their mum dresses as a blueberry or giant peach.

I get very anxious about stuff and mum eases it. Sometimes its just because shes a distraction – like when she starts singing songs from rhyme time.

Mums name means sword.

Mine means little rock/stone.

She calls me her rock,
And i call her my secret weapon.
Because you dont mess with the mamabren! They call her dragon lady for a reason!
Her eyes go red when shes angry.

It cant be easy being my mum. My mum is incredibly strong and i honestly dont know where she gets her strength from. The woman deserves a medal for putting up with me!

Thank you for everything mumsie.

“what do we do we feeeeeeeeed the dragon”

Love you always mum xxx

Love Larny


Posted in Uncategorized | Leave a comment

Songs from my shrimp.


Faith had a list of songs sent to me for after she had died.

The email came through the Monday after she had died with a message which simply said ” Enjoy the memories and spread the giggles beanie you know what to do “. I didn’t understand until I received the letter yesterday

Each song that is on the list has a story behind them. I sort of figured it would bring some sort of smile to those few people that knew faithy if they knew WHY these songs are significant.

Sex Bomb – Tom Jones.

We had quite a few physio sessions booked in for the same time. and as with most hospitals, we’d be waiting a g e s for our appointments.

one time, our physios were both almost an hour and a half behind schedule.

So in a corridor style waiting room, it was just us and her mum. I had to keep her distracted because she hated things going against schedule. I sang songs to her, she had to type in random songs to youtube, and id sing along and “dance” – it was great fun. Then I got up to put my banana skin in the bin, and suddenly she started playing through her phone “sex bomb” full blast. I danced to the bin…put the banana skin in the bin… tried to do a moonwalk back to faith whilst singing sexbomb… I didn’t really realise a bloke was standing watching me until I tripped over my stick, and went face first in to his crotch.

It was a running joke after that to sing sex bomb every time you go to a bin.


2)  Bitch – Meredith Brooks

I used to see faith a lot when I was still at college as in some of my frees or even before college if I had a late start, Id go for coffee with her and her mum in Horsham.

most of the time if I did go for coffee with them her mum would either drive me back to college or if it was good weather they would walk me back there.

We were in her mums car – and this came on the car radio.

we both looked at eachother and started to head bang to it singing loudly with the windows down.


3)  Home – Gabrielle Aplin

She always said this song sang to her, that it was a piece of music that could make her heart sing.



4) Delilah – tom jones

She talks about this in her letter to me.  But whenever she was in a dark place id sing this to her because she bloody loved tom jones.


5) Holding out for a hero (shrek) – Jennifer Saunders

Shrimpy loved shrek ( as do I ) and also we both adore saunders. and abfab – obviously.

Somewhere there is a video with me, wearing a pair of underpants on the outside, with a blanket tucked in to my tshirt like a cape, “dancing like superman” to this in a physio session that we shared together. – again it was mainly to cheer her up. Physio is painful – and she hated going.


6) Faith – George Michael

Obviously I used to sing this to her – her name was faith it would have been a missed opportunity if I hadn’t.  however I was adamant that it was TOM JONES That sang this originally not George Michael. Woops.


7) You Cant Hurry Love – Phil Collins

We both loved the film jumpin jack flash – theres a scene where whoopi mimes to this song.

We both loved this version though. got to love phil Collins.

8) Kiss- prince

she traumatised a poor cleaner once at crawley hospital. she was given pain relief that made her totally mouthy and not faith like at all…as although to me she was always my faithy, a damn right crazy woman, to the rest of the world a lot of the time she was shy and withdrawn faith. Anyway, that day she thrusted herself in the poor blokes face whilst singing this. Again theres a video of this somewhere


9)  Feels like I’m in love – Kelly marie

Our all time fav film  – imagine me and you – has this song in it.  we always said if we were able bodied and not edsers we would recreate the scene in the film where this song is played.

Our favourite line of the film is “YOURE A WANKER NUMBER NIIIIIIIIIIINE ”


10) Same Love – Macklemore & Ryan Lewis (Ft Mary Lambert)

She came out last year She loved this song, and spent the entire of month of july listening to this song every single night.

11) Eden by Sara Bareilles

She always referred to heaven/afterlife as eden. She loved the idea of there being a paradise after death where she could be reunited with people she loved.
This song has nothing to do with her view of the afterlife,but she loved the lyrics and loved the song. she’d sing it to me when I was having a bad day.

12 ) Breathing Underwater – Emeli Sande

This is MY favourite song, and when I first sent her a link to it, she listened to it and called me, with it playing full volume in the background screaming down the phone “OH MY FUCKING GOD THIS SONG IS AMAZING AND ITS SO YOUR KINDA SONG AND OH GOOD LORD YOU NEED THIS SONG PLAYED EVERY TIME SOMETHING NEEDS TO BE SAID THAT PEOPLE NEED TO LISTEN TO”.  I feel like she’s put this on here to remind me that every day is a miracle no matter what happens.

13) Don’t you forget about me – Simple Minds

Funny story-  a friend of mine kept telling me I had to watch the breakfast club – and like a year or so later I finally watched it. Fai hadn’t seen it either – so her mum got her copy and we facetimed each other whilst watching it seperatley but together (if that makes any sense) – we were both in tears by the end of the film.

14) Macarena – Los Del Rio

Believe it or not she wants this song played at her funeral as they “carry her in”  She also wants me to wear my flamingo hat. the things we do for that girl.

15) Up where we belong – Joe Cocker and Jennifer warnes.

she always said this would be her first dance at her wedding. she then said she’d never get married.  we used to mime to this song in her mums car, using my walking stick and her special drinks bottle as microphones.

16)  You Can Leave your hat on – Joe Cocker

Finally  – the song she’d sing to me at every opportunity, which was fab, until (again a medically induced high as a kite faithy situation) she had too much meds in costa and decided to sing this to me as loud as she could whilst wearing my white bowler hat.

I wish more people knew the faith I knew.  she was quite fun really was my faithy.

Lana x


Posted in Uncategorized | Leave a comment